Tag Archives: scripting

What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

Engage with the world from a place of worthiness

Embrace their vulnerabilities and imperfections

Feel a deep sense of love and compassion for themselves and others

Value hard work, perseverance, and respect

Carry a sense of authenticity and belonging with them, rather than searching for it in external places

Have the courage to be imperfect, vulnerable, and creative

Don’t fear feeling ashamed or unlovable if they are different or if they are struggling

Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this: Embrace your vulnerabilities and imperfections. Feel a deep sense of love and compassion for yourself and others. Carry a sense of authenticity and belonging with you, rather than searching for it in external places. Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made. I think I can control their future by making sure they understand just how serious all of this is. I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward. I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember? Instead of my knee jerk response of “Did you forget to feed the cat again? Why can’t you ever remember to do that?” Because, wow, there’s a world of difference between the two… and yes, I’ve said both. The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick. Baby Teddy might fall and hurt his head. Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy. I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago? And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet. I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal. I’m grateful for that, really. I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

The other night Em woke up at around 2:00AM crying. She kept saying the same words over and over. It was a kind of script, about an indoor playground that I used to take both children to when they were toddlers. It is a playground that has been closed for more than six years. “Mommy has to look. Daddy has to find new Sydney playground. The tickets are broken. Mommy has to fix it. Oh. You want to go to new Sydney playground!”

Do not try to translate this. Lean into the emotion, what is she telling you? Forget the actual words, the individual words are less important, it’s the emotion, it’s the intent…

This is what I’ve been taught. I’ve paraphrased the exact words my friend Ibby actually used, but it captures the general idea of what she has reminded me of more than once. It’s an important concept and one that I didn’t readily understand at first. In fact our initial conversation went something like this –

Ibby: Do you speak another language?

Me: What? No. I barely speak English. Do I need to learn another language? If you tell me I need to learn Russian to help me understand, I’m on it.

Ibby: (I imagine Ibby took a deep, calming breath before continuing) No. You do not need to learn Russian. But you need to feel the words instead of trying to do a word for word translation.

Me: Feel the words? Mind began to race, a panicky feeling overtook my body. I don’t know what that means! What does that mean?

And so Ibby patiently tried to explain that by getting lost in the exact meaning of the words I was missing the emotions being expressed.

With this in mind, I went back to Emma’s bedroom with her. Very distressed, she continued to repeat the script and then suddenly veered off to an unrelated, yet another, unattainable, desire. “I want to go to Martha’s Vineyard. Not binyard, v, v, v, vineyard. Mommy I want to go to Martha’s Vineyard. No baby. We can’t go to Martha’s Vineyard, it’s too cold. I want to go to Martha’s Vineyard.”

As I sat with her listening, I tried to be present, neither lying to her nor adding to her anxiety, just being present and as I did this I felt a flood of recognition. I realized I do a version of this too, only I call it “spiraling out”. It happens at odd times, but being tired makes it harder to cope with. When I think about how I spiral out an image of a pin ball machine comes to mind. My thoughts are the little metal ball careening around hitting one side, ricocheting off the little bouncy things that make noise while the lights flicker, before shooting off in another direction. Nothing anyone says helps me. In fact, often well-intentioned people will make it much, much worse, because my mind is literally looking for things to think about that will create more anxiety. The only thing that has ever helped me when I get this way is a calm, loving voice gently nudging me down a different path. It has to be authentic and very, very loving and very, very calm or I become suspicious and even angry. With this thought in mind I gently said to Em, “Is it okay if I tell you something?” She nodded her head.

“I get upset too, Em. Just like you are right now. And when I do I have thoughts that I can’t stop going around around in my head.”

She sat up and looked directly into my eyes. “Sometimes when I feel stressed and tired I can’t make the thoughts go away. Sometimes the same thoughts just keep repeating in my head and I can’t get rid of them. Daddy calls it spiraling out. But you know what? It’s going to be okay. I’m going to stay with you. It’s going to be okay. I promise. Try to breathe. Here breathe with me.” We inhaled together and then exhaled. “Feel the cool air on your face and the warmth of the blanket on your body.” I continued in this way, talking to her softly, trying to guide her, trying to make her aware of the present. These are the things that help me when I’m agitated and feeling overwhelmed and eventually she rested her head on me, leaning her body into me as I spoke to her in a soft voice.

It was during those early morning hours with the two of us sitting together while everyone around us slept that I felt a surge of understanding. When I get lost in the words that fill my head and when the words don’t match up with the emotions it feels confusing and I become perseverative and spiral out. I see this now. In the past I’ve called it anxiety. I’ve said I’m overwhelmed and tired. These are good words to describe what I’m feeling, but a more accurate explanation is that when I become fixated on specific thoughts, in my case they are often in the form of fears, I can become so lost in the specifics I lose sight of the emotions. This has happened my whole life, only it took my daughter to get me to make the connection. We are not so different, my daughter and I.

An image that calms me – The Manhattan Skyline taken while walking to my studio the other morning

Emma and I are heading out to Fire Island this afternoon with my friend, Bobbie. This has been cause for great excitement as Emma has counted the days until we leave. Last night, Emma and I had the following conversation.

Emma: Go to take Bobbie at the beach!

Me: Yeah. Are you excited?

Em: Yeah! So excited to see Bobbie and Mina and Luca. Going to go in the ocean.

Em: (Holding up her fingers) Three minus one equals two! Having a sleepover with Bobbie at the beach. Going to bring Cokie! (Cokie is a scrap of what was once a blanket, measuring about five by three inches and is constantly getting lost leading Emma to panic. We live in dread of this last large scrap one day mysteriously disappearing into the great dark unknown along with the rest of her blanket.)

Me: But Cokie has to stay in your bedroom.

Em: Cokie get lost! Ahhhhh! Who took it? Somebody threw it away. They threw it. You cannot throw Cokie. (All of this was said very quickly in an animated voice, it’s a kind of scripting, but it’s within a context in that Emma is expressing her fears and anxiety that her blanket might get mislaid.) No, not going to bring Cokie into the water. You can’t bring Cokie onto the beach, that’s silly. Cokie might get lost! Cokie will get dirty. Ick! Cokie has to take a bath!

Me: You’re funny.

Em: (Laughing) No. Not going to put Cokie in the washing machine! It’s too little. No, not going to put Max in the washing machine, he’s too big. Max can’t breath. You have to pull him out. That’s too small!

Me: Do you think we should wash Cokie before we take it to the beach?

Em: Nah. Have to gotta go. Max came to the book party. You hit Max. You pull Max’s hair. No. You cannot pull Max’s hair. You have to stop. You can’t do that. Max is hurt! (This is another script, but it’s one she made up and it’s really a spoken memory of Richard’s book party celebrating the publication of his novel a month ago. Max is a great friend and someone Emma adores. When Emma really likes someone she wants to pull their hair and hit them. She is still trying to sort out how to resolve some of these impulses while also connecting and making physical contact with another human being without hurting them. We are working on this.)

Me: Yeah. That’s really hard, isn’t it Em?

Em: Makes me so frustrated! Grrrrr!

Me: (Laughing) Do you feel frustrated now?

Em: Nah! Emma’s happy! Going to go with Bobbie to the beach. Going to have so much fun!

Just before I had this conversation with Emma, I was talking with my friend Ib. She said, “It is easy to picture Emma talking more. She can still be her if she does. She will talk oddly about odd things that she blisses out about while twirling string, and walk away mid sentence.”

And I wrote back, “Yeah, and I’ll (removed explicative) love that! Seriously love that! Because I want to walk away in mid sentence half the time…” Ib then wrote back “And frankly, in your family, it won’t be that odd. Hehe.”

Which made me laugh out loud and filled me with so much hope and happiness with the thought that Em and I could converse the way Ib and I do. And then Emma came home and I told Ib I’d talk to her tomorrow and Emma and I proceeded to have the conversation I’ve transcribed above.